Starting Chemo July 2019
Comments
-
Hi Ladies I just had my first chemo today with AC and even after taking so many medication for nausea I am badly nauseated. I got stomach cramps and diarrhea. Does anyone know how long will it last or did anyone experience these.
Regards
Flora
0 -
Flo80 welcome to the family. So I think I was the first in our group to have SE’s. After treatment I was light headed and my head felt weird. I can’t describe what the weird is i just know weird. About a hour or so later I was in bed and add nausea to the picture. Stayed in Bed all night. Tues was the same and did go to work for a while. My weds and Thursday were the worst headache came on strong and nausea. With the worst weds night. I did acupuncture thurs, applied peppermint oil to stomach and feet, switched from zofran to phenagan (not spelled right) to see if it would help more than zofran and stayed in bed. Just kept drinking as much as possible because I def wasn’t eating. I can say Fri woke up feeling much better. Not 100% but a lot better and was finally able to eat. Know everybody is different and responds different. I hope this gives you some kind of timeline and help. It’s not fun going through it at all, but keep going and don’t give up. Trust me weds night I wanted to tap out because I was done and over that mess. But it will get better.
0 -
Hi, Flo80:
Welcome to the group. Hope you're feeling a bit better right now. I am five days post my first AC. I had my worst days on day 1 and 3 for nausea. Re: diarrhea. Take some Immodium and please call your doc's office if it doesn't resolve within 24 hours. It's really important to stay hydrated.
I spoke to my nurse navigator yesterday. Based on my nausea this round, she advised upping my Zofran to 8mg from 4mg and also taking Compazine. I'm hopeful to feel better next time around. Although, all in all, it was far better than I was expecting.
Weird side effect today: A layer of skin on my face is peeling off. My face isn't reddened, the skin is just peeling. I rubbed my face softly with a wash cloth and put lots of of moisturizer on. Anyone else have this?
0 -
britgirls I have not experienced that. Have you tried aquafor? I know it’s recommended a lot and I used it all the time on my son when he was little.
0 -
I will ask my doctor if my dose can be lowered! I was so sick I passed out yesterday and went to ER. Never felt that bad. Will ask if it can be lowered. I did ask for extra fluids the last few times!
0 -
they do clean the chairs after patients leave! It has to be sterile! Maybe that helps. If not I get ut
0 -
I had sunburn. My doctor said just a little sun can cause it on chemo! Stay out of su
0 -
Prevents bone pain from Neulasta! Really does. Take a feed before chemo and continue a week after
0 -
Hi there: I just wanted to let you know what worked for me with hair loss. I cut my hair super short/ think Jamie Lee Curtis style pixie. It was quite long before that. Then, I went to get a wig. I got a short pixie style wig. I wore it to work. I teach school. At home I went bald or with a baseball cap. I ordered several from Life is Good. I also wore a silk cap under my wig. I got it at a specialty store. The woman at the store recommended it and she was right on the mark! It was much more comfortable and less itchy to wear the wig
. My hair fell out 17 days after my first treatment. I started chemo 8/10/18 and finished on 12/28/18. So, about 6 months since my last treatment and I have a short pixie grown in.
Sending good thoughts your way🌈
0 -
Ccowen52 The nurse where I am at specifically said they didn't clean the chair a so I'll be using a fitted sheet to cover it. I hope you're feeling better today.
Cancergirl49 thanks for the info and tips. So how are you feeling after your treatments?
To all my other ladies how are you feeling? Haven't heard from you and I hope you're getting better 💕💕
0 -
I got my port placed on 7/10 and had my first cycle of chemo (Taxotere, carboplatin, Herceptin, and Perjeta) on 7/12. So far my nausea has been controlled by the premeds I got on Friday and the steroids I took the day before, day of, and day after chemo. I had some diarrhea yesterday, but Imodium helped. I'm worried about how bad the side effects are going to be
I got diagnosed at age 30. Any other young women starting chemo this month? I didn't see any other women my age in the treatment room when I got chemo, and I feel like a lot of my friends don't understand what I'm going through. I'm so nervous to lose my hair! I was supposed to get my married in September, but my cancer diagnosis caused my fiancé and I to decide to postpone our wedding until next fall.
0 -
oceanbreeze7 welcome!! I'm glad you are doing well so far with SE's. I am 40 was was diagnosed by my first mammogram. I'm very lucky and blessed it was caught early and the chemo I'm having to do as a preventative based off my oncotype test. Was a HUGE shock for me and was very hard for me to swallow. I chose a double mastectomy instead of a lumpectomy because I am so young and didn't want to have anymore problems and have to repeat anything. I def understand the losing the hair part because that was what was so hard for me to accept. Everyone that knows me knows my hair is #1, I get made fun of all the time about how peculiar I am over my hair. If I heard oh it will grow back, you can get a different color wig for each day, this is temporary, or best one omg you may get curly hair when it grows back I was gonna CUT someone. Nothing anybody says is going to help you work through that in my opinion. It's something you're going to have to get in your head and work out. I've decided I wasn't going to style mine anymore and touch it as little as possible to keep it as long as I can. I wear hats now. I will continue with my hats because I do not want a wig or a head cover etc. Finding this site and being in this group has been a HUGE blessing for me. It gives me so much information and someone that understands what I'm feeling and where I don't have to be strong and I can let out what I feel. And we get to meet new people so I'm thankful I'm apart of this group. You will get through this and will make you stronger and your relationship stronger 💕
0 -
Oceanbreeze7 - I'm sorry you're here, but glad you found us. Being diagnosed young carries it's own special circumstances. I'm sorry that this cruel disease caused you to delay your wedding. It sounds like you have a very supportive fiance by your side. I'm 43 and had my first cycle a week ago. Like jjpope1, my chemotherapy is preventative based on my oncotype score. I had a lumpectomy and SLNB in May.
Jjpope1 - I am GRATEFUL to be done those damn Grastofil shots. Last one was Friday. 🎉 I'm still dealing with diarrhea (Imodium is my BFF), but this isn't new to me as I have IBS and the diagnosis definitely caused a flare-up. I am realizing that I may be attributing some side effects to the chemo when it may not be. I woke up today with no headache or joint pain. It rained here last night. I always get headaches and joint pain before a storm (walking barometer). Doh 🤦 How are you doing?
0 -
Oceanbreeze- welcome, I will say a special prayer for you today. I pray for all of the women on this thread too. I do believe in the power of prayer. You are in good company here, and it is so good to speak with people who are been through or going through the same.
Jjpope1 and Fairydragonfly- hope you don't mind me asking this.. I was also put on chemo due to onco score only. Did you ever get a straight answer from your MO regarding the preventive benefit of chemo for your higher onco score? My MO kind if dances around the subject when I bring it up. I guess that I realize she can't exactly pinpoint actual individual benefit. My sheet states greater than 15% benefit, but back of sheet states absolute average of 24% benefit, so may even be of a higher benefit for us. Let's hope for the higher. My onco score was 48 and I finished chemo July 10th. I must say that MO cutting dose by 10% really helped to mitigate my se's. Still have some fatigue, but compared to first 2 treatments, very doable. Hope this helps.
Prayers and blessings to all:)
0 -
UpstateNYer - my score was 50. Greater than 15% was enough for me that I didn't question chemo further. I'm hoping that the actual% is higher than 15.
0 -
Fairydragonfly- I know that the studies show that the higher the onco score, the greater the benefit of chemo. I guess it is a good insurance policy for us too. There are some with lower scores, where chemo is not indicated, who still get recurrence. I believe that we have to do all that we can to beat the beast. I was very hesitant to do chemo at first, but now glad that I did. Hope the rest of your treatments go smoothly with minimal se's. Have a blessed day.
0 -
I’ve spent the last 24 hours with diarrhea and vomiting. Like you, Fairydragonfly, I have IBS which usually manifests as nasty spastic colitis attacks. One started yesterday and it went downhill from there. Have managed a banana so far today. I don’t know whether these are SEs to look forward to each week, or just stressed out guts. Sigh, and here I was looking forward to feeling better this weekend.
0 -
Dvhmouse - Ugh, I'm so sorry to hear that you too get to ride the IBS train along with chemotherapy. Due to my IBS, my oncologist reduced my Taxotere by 15%. If your symptoms don't improve, I recommend talking to your oncologist. My understanding is that the reduction to mine has no impact on efficacy.
0 -
Thanks Fairydragonfly - I have my first appointment with the APN before my treatment tomorrow. I’ll talk to her about it
0 -
hi July Chemo Fam- my MO is trying to give me a little heart attack ( I’m kidding) she called just now check in and make sure we were all good for port placement on wed and chemo starting on 7/24– there was like a scheduling issue I had to work with a tech to square away on Friday- but i really didn’t expect the doctor herself to contact me - I panicked when she calledI guess she is Just more hands on?
0 -
UpstateNYer sorry for late response my score was 25 he said with a 12 % recurrence chance. He said in my eyes that wasn’t a lot but in his it was big. Like a 1 in 10 chance someone would have it. So that’s why he wanted to do chemo. He initially thought based off what he had so far (pre oncotype) that he didn’t think I would have to have it but he would have to wait for the oncotype to come back because he had been wrong before.
Hope all of you have had a great start to your week. I feel normal and eating good, other than being HOT AS HELL. This NC heat and humidity it CRAZ
0 -
Jjpope- thanks for the response. Good for you in taking the chemo. I really did not have a choice, as my onco came back quite high. Your MO sounds very good with regard to waiting on commenting about needing chemo before the onco score came back. Both my surgeon and MO kept reassuring me that I would not need chemo, as both felt my onco score would come back low. Boy were they both surprised.
0 -
UpstateNYer well my breast surgeon said I didnt have to have anything else is was all in the clear so I didn’t even think chemo was in the air 😩😩
0 -
Jjpope1 and UpstateNYer - when I first met my surgical oncologist, she used words like "highly curable" "highly treatable" and "not aggressive". I was also told chemo would be highly unlikely. In reviewing my biopsy, they didn't indicate grade but it did say estimate high Nottingham scale, so I don't know why the surgeon told me it wasn't aggressive when a) she didn't know and b) the biopsy hinted to aggressive. I may have made different choices otherwise (mastectomy instead of lumpectomy).
Even though my margins were clean and no cancer in the lymph nodes, I was blindsided when I found out it was aggressive and devestated when the medical oncologist told me she highly recommended chemotherapy. I requested the oncotypeDX test because I needed time to process the changes.
My score nearly knocked the wind out of me. 39% chance of distant recurrence in 9 years with chemo reducing that by at least 15%. Worst case, with chemo I still have an almost 25% chance of seeing this again. And I am still waiting for the results from my genetic testing that could make this even worse.
Truth be told, I have been dwelling on this alot the last few days. I'm scared. I'm too young for this $hit. I feel like I have this axe hovering over my head, and I will never know when it will drop.
0 -
Fairydragonfly I’m so sorry! It’s so much to process, think, and feel in the first words of BC. But to have so many options, so many unknowns, just so much of everything consumes you. I def know and understand how worried you are. As I said before I chose DM because I was 40 and for this to happen now I def wasn’t taking the chance of it coming back and having to go through the process again. My surgeon suggested lumpectomy and I cancelled that quick fast and in a hurry. Once I received that call it consumed everything. I was so in think and research mode it physically exhausted me. I could barely go to work and make it home because I was so exhausted. It’s crazy how you’re mind can control everything. I’m a fixer, I always take care of everyone else, I yes I guess I can say I feel I have to have control and I couldn't fix or control this. The unknowns are so scary and I have to constantly remind myself the God is in control and this is all in His plan. I have to have faith and have trust in Him.
Can you imagine the ones that don’t do research, ask questions, that just go off of what the dr says and leave it at that? It’s so sad to me that there are so many that have no clue or chose to not know. I want to know everything from A to Z. I was so thankful I found this site because I had so much valuable information and first hand advice where nothing was ever offered to me by either doctors or office. Basically this is what you have and this is the remedy. I wish I could post this site everywhere I go just to help someone else.
I’m so glad to have all of you to share my experience with and to be able to be honest and not the brave strong willed hard headed Ms. Fixer and Doer that I’m known to be. I can tell you how I feel, if I’m weak, scared, whatever and you get it. So thank you to each of you for being my person in this rough crappy time. But Joy comes in the morning and WE WILL DEFEAT THIS. One day at a time. We may have set backs, bad days, bad news, whatever it is we will take it as it comes and MAKE IT
💕💕💕💕
0 -
Jjpope1 - I didn't have much of a chance to research prior to surgery and trusted what my surgeon was telling me...
- DX April 17
- Surgeon called April 23 and booked surgery
- Met surgeon April 27
- Seed placement April 29
- Pre-op April 30
- Lumpectomy and SLNB May 1
It was during the recovery and finally learning more about my type of cancer that I started questioning the lumpectomy... Oh well. Nothing I can do now.
Big hugs all around.
0 -
Jjpope. I am like you, I need to know everything and I need to figure out what we are going to do about it. (so to speak) I spent last weekend reading abstracts of various medical studies. It helps me cope but also I can accidentally fall down a rabbit hole and wind up with anxiety that does me nooooooo good. I think people cope in different ways. Some people are paralyzed by detail.
Today is an MRI and then a port placement for me. I'm more stressed about the MRI than the port placement.
FWIW my MO called and told me my Oncotype was 31. I get the paper today that says the reduction in using chemo plus estrogen suppressors. My MO already said I'm looking at 10 years on tamox/AI. If that is what it takes to avoid a recurrence I'm doing it- ya know. And fingers crossed maybe new research gives us better options on the suppressors some day soon.
Fairly Dragon that's ...incredibly fast--I had my results 5/6 and my surgery on 6/25. I had a lot of time to research, talk to people and get my genetic testing done- I came back BRCA -2 - so that is why I chose the BMX.
How is everyone doing today? big hugs everyone!
0 -
jjpope and 2019whatayear- I exactly know what you were feeling. I too am a fixer and a doer. I also am an insanely "do the research" and "look at the studies" person. When my margins came back unclear, I told surgeon that I wanted a mastectomy. She promptly told me, "NO". This was before onco results came back. But, I think that if cells were to have already escaped, would be a moot point anyway. Many that have had mx have recurrences. My hubby's cousin for one. My genetic tests came back all normal ( I had to fight to get that ordered) thank God. Anyway, at least we were given the choice to have chemo. There may be a greater decrease in recurrence than what the averages show according to my MO. Some women with low onco scores, never took chemo and have recurrences.
Fairydragonfly- A long term survived on another thread who took chemo had told her MO after chemo that she was still worried and afraid of recurrence due to very high onco score. He told her that since she had taken chemo, that the score is no longer an issue and to put it out of her mind. I guess good advice. Also, there is one woman I know of who had high onco, did not take chemo, and is 10 years recurrence free. I was like you, horribly worried at first. I have come to terms with it, although I am much older than you. No one knows what the future holds. We make choices with what info is afforded us at the time. We hope for the best, and try to prepare for any bumps in the road. If your genetic tests come back BRACA positive, you can always do bmx. Wishing you all the best.
0 -
UpstateNYer- Thanks for the prayers!!
Fairydragonfly- Thank you for making me feel welcome.
0 -
Busy day ahead tomorrow. First, appointment with my oncologist. Not worried about it, as we will likely be discussing how the first cycle went and making any changes that are required. What has me in a panic is that I will be receiving my genetic testing results tomorrow afternoon. I got the call this morning and they fit me in tomorrow. I know these results could potentially change my treatment plan and it has me pretty stressed out.
Lastly, I am getting together with a few girlfriends and we're shaving my head. I have not had any hair loss on my head, but my hair has definitely stopped growing on my legs and under my arms. I know I am jumping the gun a bit, but I didn't want it to start falling out and not being able to do this with my friends.
Besides, it's summer and bald is beautiful.
Wish me luck tomorrow. I'm hoping fatigue doesn't knock me out.
0
